Guarded Hope

It wasn’t until something that I wanted so badly was completely out of my control that I understood what it meant to hope. I didn’t know what hope was until it was all I had.

When I found myself in the emergency room, I remember the doctor explaining to me the gravity of the situation. He said that I had severe preeclampsia. I would have my baby soon. I was only at 24 weeks and assumed he meant somewhere closer to 30 weeks. I have heard of 30 week babies being delivered. However, the doctor wasn’t finished. He continued to say that if my blood work did not look good, I would have to have my baby immediately. I cried while I waited for those results. There was nothing else I could do.

Fortunately, I was given a reprieve. I was allowed to carry on with my pregnancy while on hospital bed rest. In the best case scenario, I would be able to carry until 32 weeks. I was afraid to hope for 32 weeks. I could only hope for my baby to reach 1 kg before delivery.

My baby was delivered at 26 weeks. She weighed 790 grams.

The first time I saw her, I was only able to hope for her survival. Each day, I stroked her head and hoped that she would make it to the next. Gradually, she got stronger. It seemed too greedy to hope for her to come home. Instead, I settled on hoping for improvement each day. There were days, I wasn’t so lucky. On those occasions, I regressed to hoping for survival.

That is how Charlie’s NICU stay went. I hoped one day at a time while constantly being reminded “Never trust a preemie.”

One day, her doctor used the word “home”. It was too much. He exceeded what I could hope for. I started crying in the middle of the conversation. I knew she would come home eventually. However, up until that moment, I felt like it was too much to hope for.

We left the NICU almost six months ago. I continue to find myself hoping. Due to her developmental delays, I find myself hoping for each milestone or for therapy goals. Some days, I hope for and delight in the slightest signs of progress. I was asked to set Charlie’s long term goals for Early Intervention. I find this task to be impossible.

What I want and what to hope for are two very different things. I want her to “catch up” by the age of two. I want this whole preemie thing to be behind us. I want it to be a history and nothing more. But, I can’t hope for that yet.

I can hope that she will walk. I can hope that the momentum gained in physical therapy will continue. I can hope that she will learn to eat.

To me, hope is a double edged sword. It is what is left and what I cling to when things are out of my hands. Conversely, hope is a reason to carry on when jaded and weary. It can be crushed in an instant. After so much loss and heartbreak, it is important that I guard it. I look forward to a time when I can hope without restraint.

Adventures In Pumping

I hadn’t fully decided whether I was going to formula feed or breast feed when I became pregnant. Because she was three and a half months early, I committed to breast feeding. My decision was based on such factors as the lower incidence of NEC among babies that received breast milk and shorter NICU stays on average for breast fed preemies. I was informed of all these things by one of Charlie’s doctors the first time I saw Charlie… Two days after her birth.

After the consult, I was deemed well enough to pump. So began my over zealous attempt at pumping. I was aware that it took a few days for the milk to come in. Like a well disciplined soldier, starting from two days after Charlie’s birth, I pumped every two hours as the lactation consultant instructed. The lactation consultants would visit twice a day and ask “anything yet?” Finally, after three days of pumping… COLOSTRUM! It was only a few drops. A tenth of a mL according to the syringe used to collect it. However, it was enough to encourage and further motivate me.

After a week of pumping, I was finally discharged with a hospital grade breast pump. On the way home, I bought a small cooler to transport the copious amounts of breast milk to the NICU that I was sure I was going to produce. I stocked up with Snappies and syringes in which to collect the milk. I was ready to be a dairy cow for my baby.

I followed the instructions from the lactation consultants flawlessly. I pumped every two hours with a rented hospital grade pump for at least fifteen minutes. The drops of colostrum had changed to drops of milk. However, it was never more than a couple mL each attempt.

Every morning, I turned in my carefully labeled syringes before scrubbing up to go visit my baby. There always seemed to be some other mom turning in what seemed like gallons of breast milk at the same time. They were the same moms that I would see with over flowing snappies in the pumping room. I hated those mothers. I envied those mothers.

The first two weeks, no one other than the lactation consultants paid attention that I was only making a few mL a day. It changed when Charlie was being taken off TPN. The doctors were going to try a transpyloric feed at .2 mL an hour. That is when things became stressful and out right crazy.

Every person I came in contact with wanted to know how the pumping was going. It was a question that became part of the greeting “Hello Rebecca, how is the pumping going?” There was only one answer that was acceptable: “Swell, I’m making exorbitant amounts of milk.” Any other answer resulted in a meeting with a lactation consultant.

At first, I tried to use these meetings as a resource. I attempted to trouble shoot why it would not work. I experimented with different ideas. I used a variety of sizes of flanges, brought home Charlie’s blanket so I could smell it while I pumped, and pumped immediately after the rare occasions I got to hold Charlie. Nothing seemed to work. These consultation sessions changed from helpful trouble shooting into accusations that I wasn’t trying or was not working hard enough at it. Each session concluded with a lecture on how breast was best.

A few days after Charlie began transpyloric feeds, a doctor approached me. They were running low on what little milk I supplied and requested I sign the permission forms for her to receive donor milk. I cried as I signed the forms. My body failed at having a healthy pregnancy, I have failed Charlie again at providing nourishment. I was 0 – 2 so far as a mother. I had never tried so hard nor wanted something so badly and yet failed miserably.

Despite this set back, I kept pumping and the lactation consultants had become pestering shadows. I felt like they had a sixth sense to know when I was in the hospital. If I was in the hospital, there was a lactation consultant trying to meet with me.

After desperately trying to pump for six weeks, I decided to stop one night. I was fatigued from NICU life, from the sadness and mourning of having a micropreemie, from the isolation and loneliness, from the fear of losing my baby, and from the lack of sleep that comes with pumping every two hours. I decided I had enough of the pumping experience. I was done. So what if my baby received donor milk?

I told my husband about my decision after he asked, “Aren’t you going to pump before bed?” He was a little bothered but he supported my decision. He saw first hand how miserable the whole experience had been for me. I slept all night for the first time since I was hospitalized for preeclampsia.

At the hospital, word spread quickly in the NICU that I stopped pumping. The nurses were very supportive. A few told me that many micro preemie moms can’t breast feed or pump. My OB/GYN said he didn’t think I was going to be able to produce milk because of the severity of preeclampsia, the BP meds, and my baby being in the NICU. The lactation consultants were not so understanding.

They kept insisting that I pump. At first, I made up some excuse so they would leave me alone. But, it didn’t work for long.

The final straw happened during a precious moment of kangaroo care. During Charlie’s first two months, kangaroo care opportunities were sparse and meager. The lactation consultant decided to discuss my milk shortage during one of those rare kangaroo sessions with Charlie. I became angry. How dare she encroach on such a sacred time?

I politely but firmly explained that I stopped pumping and my baby would receive donor milk. She responded that now the pressure is off that I should try pumping. She continued to say stress can make milk production low. She repeated the breast is best indoctrination which I had heard about one hundred times.  I was so furious that I was crying. I just wanted her to go away. I barked, “Then why are you bitches riding my ass?!?!”

It wasn’t a moment of class nor grace on my part. Nevertheless, pumping was never mentioned to me again by anyone in the hospital.

I feel like I should conclude by expressing my gratitude for the selfless women who donate to milk banks. My baby was able to receive breast milk because of their generosity. As it turned out, milk banks (and later, formula) were what was best for me and my baby.

I support every mother in whatever choice they make to feed their baby.

Gratitude

By late afternoon, today had already been a long day. Charlie had a home health nursing visit followed by a physical therapy session. Afterwards, she tired out and fell asleep. I took advantage of the lull and checked my email.

There was a message waiting for me in my inbox. A friend of mine has chosen to honor Charlie by sponsoring us in the March of Dimes March for Babies. Touched, I teared up.

Gratitude is one of the reoccurring emotions I experience since Charlie’s birth. I have received copious amounts of kindness from so many unexpected places. There are no words to describe how thankful I am.

One of the few clear memories I have from the week Charlie was born is the discovery that close friends had given us the crib we chose for Charlie as a gift. It was completely unexpected and too much. It was perfect for the moment and the confusion surrounding it. They were celebrating our baby’s birth with us. Despite her early arrival, they chose to celebrate instead of treating it as a tragedy. It was a loving and supportive gesture.

During Charlie’s NICU days, I remember the nurse that patiently explained my baby’s condition to me each morning. She taught me how to change Charlie’s diaper and perform her “hands on” care. Our conversations filled many of the long days that I sat alone in the NICU. I feel like she not only took good care of Charlie but she held my hand through the early months of NICU parenting as well.

One of my friends was studying abroad when Charlie was born. She came home by the time Charlie was released from the NICU. She was unable to meet Charlie until Charlie was six months old. After spending the day together laughing and catching up, she sheepishly handed me a bag. She explained that it was a dress that she purchased abroad for Charlie. The dress was beautiful. I treasure it because I realize that she was thinking of Charlie and I in the NICU despite being a world away.

I will finish by mentioning the friend that found time in her busy schedule to frequently visit when Charlie was transferred to a level 2 NICU. She brought scrap booking materials so I could finish the scrapbook I started in a NICU class. She understood what I needed with out me having to say it.

A handful of people reached out to us. There are many ways in which people were gracious in words and actions. From health professionals to complete strangers, I will not forget the compassion demonstrated towards me. From it, I have ascertained a deeper meaning of gratitude.

Saying The “Right” Thing

A couple nights after Charlie’s birth, my husband and I were up late in my hospital room discussing what we should do about birth announcements. He was showing me a beautiful picture he had taken of her resting comfortably in her isolette. 

We had a few concerns. People were not used to seeing an extremely premature baby. We feared that their discomfort would result in unfavorable and critical feedback. Second, we wondered how to handle  questions and comments if she didn’t make it home from the NICU. In the couple of days since her birth, we’ve also discovered that many people can’t accept that bad things can happen for no reason. They are quick to theorize or assign guilt. We did not need that either.

Together, we decided “Screw those people!” Charlie deserves to be loved and celebrated just as any newborn does. We were going to love her and celebrate her no matter how long she was with us. We sent out a Facebook posting with her picture and birth statistics. We braced ourselves.

The people who always know the right things to say… didn’t disappoint   My favorite comment on that post is “With all sincerity, congratulations! Amazing. Life will find a way. Awesomeness.”   

In addition, I appreciated the people who spoke candidly. Even though, it may have been a clumsy and awkward attempt. Nevertheless, I understood the sentiment.

The least helpful were the cliches. At the very least, they were trite and wearied. To me, they are escapes or a way out. It’s a way of not having to deal with a situation. They minimize the gravity and reduce the amount of consideration involved.

Later on in Charlie’s NICU stay, I had an out of town friend text me “I want to help but I don’t know how. Please tell me.” The text, in itself, helped. Almost any NICU mom can tell you that they would love to receive that text. 

Sitting in the NICU, I watched Hunger Games. My ears perked up when someone said to Katniss “I’m sorry that this happened to you.” That is perfect! That is what I needed to hear from people who spit out an adage because words had failed them. Why can’t that phrase be commonplace? 

So what is the right thing to say?

First, there are lists online of what not to say to preemie parents. Take the five minutes to read one. Here is one of the many http://commonhealth.wbur.org/2011/06/insensitive-remarks-preemies Don’t say any of those things. Second, know that silence is just as hurtful as the worst thing that can be said. Third, if you are not close then don’t inquire about the situation every time you see them. It is painful and exhausting to restate troubling information repeatedly. Don’t make commitments that are conditional or you don’t intend to keep.  

Say something honest, sincere, and from the heart. The attempt will be appreciated even if it is gauche. Actions (or non actions) can mean as much if not more than words. Finally, get over yourself. When being supportive, it is not about you. The right thing to say and meaningful actions flow easier if there aren’t preoccupations with one’s own comfort level and their appearance. 

Life can be messy, maladroit, and uncomfortable. Don’t be afraid to get a little grimy. It will be appreciated and may be desperately needed.

No Apologies

One of my favorite preemie mom blogs wrote a post that seemed a little apologetic for being less than stoic about her situation. I’ve noticed it’s a common theme. From the blogs I’ve read (too many), special needs moms seem to feel bad about complaining. The expression of negative emotions are often criticized, ignored, or dismissed by others. Somehow, we are supposed to always see the bright side. I wrote in the comments section on her blog as follows…

“I think it’s OK (even healthy) to complain to a certain point. The stuff special needs moms are dealing with isn’t trivial. I think it’s unfair for people to expect special needs moms to be strong and positive all the time. It aggravates me when people say trite things after I admit that I’m scared for my baby or that I’m struggling at times. We’ve all heard them way too many times… Things happen for a reason…. God doesn’t give us more than we can handle… What doesn’t kill us makes us stronger.  It’s even worse when someone replies, “But you’re so strong.” as if being anything but strong isn’t an option. I think my least favorite is when someone offers anecdotal evidence and concludes my baby will be fine because that baby was.

Don’t get me wrong… I’m so grateful that my micro-preemie is home with me. I am overjoyed at things other parents take for granted. Conversely, I do have those days when I am overwhelmed and scared. I don’t think I should have to apologize for expressing that…”

In short, I am not a super hero. I am a parent. I fight as hard for my baby as most parents in my situation would. Yes, there are days that I am overwhelmed, tired, and/or stressed by it all. I would be lying if I said that I was handling things flawlessly. Please don’t expect me to pretend things are great ALL of the time. There are times when I just need someone to listen… even if they don’t know what to say. Sometimes I may feel the need to whine, cry, or yell… it’s par for the course I’m on. For that, I make no apologies.